James Lind Alliance
The James Lind Alliance (JLA) is an initiative that brings patients, carers and clinicians together in Priority Setting Partnerships (PSPs) to identify and prioritise the Top 10 unanswered questions or evidence uncertainties that they agree are the most important. We contacted the JLA last year to set up a Priority Setting Partnership for Pernicious Anaemia. PSP’s enable clinicians, patients and carers to work together to identify and prioritise evidence uncertainties in particular areas of health and care that could be answered by research. The JLA facilitates these partnerships, but the funding and organising is supplied by the PSP itself.
The aim of the Pernicious Anaemia PSP is to identify the unanswered questions about Pernicious Anaemia from patient, carer and clinical perspectives and then prioritise those that patients, carers and clinicians agree are the most important for research to address.
The objectives of the PSP are to:
- work with patients, carers and clinicians to identify uncertainties about the Diagnosis and Management of Pernicious Anaemia and to agree by consensus a prioritised list of those uncertainties, for research
- publicise the results of the PSP and the process
- take the results to research commissioning bodies to be considered for funding.
For the first time, patients, clinicians, healthcare professionals and anyone else with an interest in how Pernicious Anaemia is diagnosed and treated will be given the opportunity to give their opinion on what researchers need to address in all things to do with Pernicious Anaemia. We had a series of online meetings with Officials at the JLA during October and held our first meeting of the Steering Group in November.
The project is managed by a Steering Group, led by an independent chair from the JLA. The Steering Group includes patient representatives as well as professionals. The role of the Steering Group is to manage the PSP, ensuring that it is delivered in a timely way and adheres to the JLA’s key principles of transparency, inclusion/exclusion, equality of voice and use of the existing evidence base.
Developing the Protocol and the Survey
The first meetings of the Steering Group focused on developing the protocol, the terms of reference, the plan of action and finding potential partners for the PSP. The Steering Group then formulated a Survey that will be sent to you, clinicians and other healthcare professionals who have an interest in Pernicious Anaemia. It’s surprising how many people have a vested interest in identifying and addressing the uncertainties with the diagnosis and treatment of PA. The Pilot survey was distributed last month and minor tweaks were made following very useful feedback. Our thanks to those who took part in the pilot study and for their comments. The survey will provide us with a long list of questions and then a workshop will he held to whittle these down to a ‘short-list’ which will then be ‘evidence-checked’. We will then come back to you with this list, so patients and healthcare professionals are able to vote on what they consider to be the most important questions.
The highest ranked questions from that interim priority setting survey are discussed in a number of workshops of patients and clinicians who together agree the ‘Top 10’ list of priorities. This ‘Top 10’ will be announced and published on the Pernicious Anaemia Society website and the James Lind Alliance website and promoted to researchers and funders.
Your experience with Pernicious Anaemia is critical
We want as many of you as possible to complete the survey which we’ve designed so that it’s easy to understand and use. Most people in the pilot completed the survey in around ten minutes – but the good thing is that there’s no time limit so you can take as long as you want to point out the problems that you have identified with not only the diagnosis of PA but also the treatment and management of the disease. The survey is open to anyone living in the UK. If you suspect you have Pernicious Anaemia but have not had a firm diagnosis, you may still complete this survey. Thank you for taking the time to complete this survey. Your support is greatly appreciated!